Coping with My CHD: Finding the Balance

Friday, February 23, 2018

This past weekend, my husband and I went on an amazing adventure. We traveled to Michigan’s Upper Peninsula (UP) to go dog sledding. As in, we get our own pack of dogs, hop on a sled and they pull us through the beautiful UP winter woods. It was one of the greatest experiences of my life.

One of the better things about our vacation was being off my phone and living in the moment and enjoying my company—Mike. Our lives are so busy down in the city with our 9-5 jobs, rush hour traffic, and the mindless adult tasks of never-ending laundry and doing the dishes, that sometimes I miss that time to just be. Just be with myself, and with Mike, in the moment.

On the opposite end of that, I have met some amazing people through social media, one who even blogs for ACHA who I can call one of my best friends—without even meeting face-to-face.

It was around this time last year I was fully “introduced” to my CHD. I met a few people whose son or daughter had a CHD—and they'd never met a CHDer who is an adult. Their reactions to me, I will never forget. It was amazing. It pushed me to become more involved in this community that I can now call my second home. About midway through last year, though, it hit me that this was my reality and some days I resisted it hard. I pretended I didn't have a heart condition because I was unaware and fine before, what was the difference?

The difference is that I am an adult and have to take care of myself, and some days, I don't want that responsibility. That's where Mike comes in. He is there for me in times I don't care to remember, and although my heart condition hasn't caused me much physical restriction, it had become heavy mentally. I started to check my Instagram every day, searching for people with the same condition as me, becoming obsessed trying to figure out “what happened to them” and wondering if it would happen to me.

With the support of Mike—someone who would just listen—I was able to break through and find a balance. I began yoga and accepted myself for who I am and came to an understanding that I am different from everyone else. We are all different and can't compare our conditions. I finally became OK with that. I laid off the Instagram, wrote blogs for ACHA, and channeled my energy to come up with ideas to one day hopefully help people who struggle physically, mentally and emotionally living with CHD. Lastly—I went dog sledding.

I never knew you could just go dog sledding. I was so excited. I got permission from my cardiologist to go and I did it—I dog “mushed.” And guess what? I fell off my sled. Twice! The second time, my sled hit a tree at 15 miles per hour and I slammed onto the snow trail, thought for sure I broke my nose and fell right onto my left shoulder/back. But I got up, and I mushed for another six miles. Because that is what warriors do.

And you know what else warriors do? They take responsibility for their situation. Once I had cell service I immediately emailed my nurse about falling. She said exactly what I thought she would, “Sounds like you’re OK! What a cool experience!” No broken bones, just sore muscles and an even stronger heart—in more than one way.

I know I am still coping with my CHD and that I will still have “those days” where I don't want to have my heart condition anymore, but I also know I have even better days ahead. I have support from friends through the CHD and ACHA community, but also a strong family support, especially Mike—who is just as new to this as I am, and taking it like a champ.

I think I've come to find that anything in this life, whether it be your heart condition, growing up or finding your passions, is about balance. I've learned to take the good with the bad, even when I didn't want to do it. I didn't want to email my cardiologist on my vacation, I felt like a baby, but that is what coping with my CHD has taught me. That I'm not a baby at all, I'm just taking responsibility and sometimes that means having to do things I don't necessarily want to. In reality, I am just a badass with CHD who happened to fall off her sled while dog mushing.

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Emily Moore was born with pulmonary atresia with an intact ventricular septum and had open heart surgery soon after being born. She had the Fontan procedure, which involved having two separate surgeries after her initial open heart surgery. Emily recently got married, and lives with her husband in the Detroit area, where they both also work. In her free time, Emily loves to do "arts & crafts," read, fish, and just relax watching Netflix after a long day of work. She works for a financial planning firm and loves her job and coworkers. Emily is hoping to connect with other fellow CHDers like herself and can't wait to learn more about the heart community and how else she can get involved!

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